- Meet Consumers/Patients
|Newsletters: From TPN to Transplant|
From TPN to Transplant
Marlaina Curry, Former HPN Consumer
Everything was going well for my family and I until the spring of ‘95 when my bilirubin was slightly elevated. I was put on Actigall for the next year and that helped to keep my numbers down. In June of ‘96, however, my numbers increased slightly and jaundice became noticeable in my eyes. The Actigall was increased and a number of antibiotics were prescribed over the next several months.
Troubling TimesBy October of ‘96 my bilirubin jumped to 6 and my gastroenterologist, referred me to the chief of hepatology at the University of Pittsburgh Medical Center. After a series of tests, the doctor ruled out all other causes of liver disease. I was told I had TPN-related liver disease and that a liver transplant would be necessary. It was also decided that I would be a candidate for a small bowel transplant, so that future TPN would not destroy the new liver.
In January of 1997 I underwent many tests and met many doctors, nurses, coordinators and the like, as part of the evaluation process. By February I was accepted as a transplant candidate and was soon put on ‘the list’ and given a beeper to keep with me at all times.
The next few months were rough. My health was deteriorating and all I could do was wait. I was very jaundice (olive green in color), my energy level was low, I had no appetite and my weight dropped from 115 pounds to 105 pounds (I am 5’5”). I was put on TPN nightly and I needed two blood transfusions. I began taking Aldactone to decrease the swelling I had in my ankles and legs. I had several episodes of thrush in my mouth and my gums and teeth bled frequently. During this time my bilirubin went as high as 29 and I had pain and tenderness in my liver area.
The Road to RecoveryFinally on June 16, at 10:30 p.m., the call came that organs were available for me. This was the third call, the first two were false alarms which resulted in painful let-downs for myself and my family. (When an organ becomes available, the transplant center calls more than one person in case the person best-matched for the organ is unable to accept the organ at that time.) Heart pounding, hands shaking and tears running down my face, I called my husband at work and told him to come home. We dropped the boys off at my parent’s home, gave hugs and kisses, and drove to Pittsburgh (a 45-minute ride from our home).
I was operated on the next morning, June 17, my birthday. I now have another very special reason to celebrate this day! The surgery lasted 17 hours and was a success. I progressed remarkably well, so my entire hospital stay was only 21 days. I was taken off TPN before being discharged. I remained on Jevity enteral feedings for an additional four weeks after discharge. As I began eating more orally I was able to decrease the Jevity until I no longer needed it at all.
At first I was taking about 35 pills a day, now I take about 20. They include the anti-rejection and immuno-suppressant meds, Prednisone and Prograf (FK506), Prilosec, magnesium, Bactrim and Nystatin. (Medications vary considerably from patient to patient in both types and dosage.) In the beginning I experienced shakes, tremors, burning in the hands and feet, nightmares and mood swings as temporary side effects from these meds, but I don’t experience any of them now. I am able to eat everything and do not require any supplements. Unfortunately, though, I now have to watch my weight! I also had an ostomy bag until November of 1997; the stoma was used to do frequent biopsies of my new intestine.
Losing my dependence on TPN is certainly a blessing, but in reality, all the doctors visits, medications, etc. that go along with the transplant make me realize I’ve simply traded one set of issues for another. Having a transplant is not a decision to take lightly or to make hastily. In fact, for me, it was my only option. I’ve been lucky, having only experienced very mild symptoms of rejection on two occasions, Labor Day weekend and just after Thanksgiving. Both times they increased my medications and I was fine. I’m very conscious, however, that I am never really out of the woods. Rejection could happen at any time. I watch carefully for the symptoms of gut rejection which are similar to the flu: diarrhea, fever, nausea and a tired, aching feeling.
Moving ForwardIn mid-October I began walking two to three miles a day which is helping to rebuild my muscle tone (I became very weak before the transplant), boost my energy level and control my weight. At present, I am almost back to my old self again. I am very thankful to have such a successful recovery and hope and pray that things continue to go as well as they have. I would not have gotten through this without my family and friends. Everyone was concerned and helpful. My husband was remarkable, taking on the role of “Mr. Mom,” housewife, nurse and pharmacist. Family and friends helped take care of the boys and brought home cooked meals for us. As many of you know, this is very much appreciated at times like this.
I would like to add that I would not have been given this chance if it weren’t for the person who was willing to be an organ donor. If you have never given this a thought, you should, because what happened to me could happen to anyone. Information about organ donation is available from your local organ recruitment center as well as hospitals, doctor’s offices, etc. There are thousands of people waiting for organ transplants and hundreds die each year before an organ becomes available. I am one of the lucky ones who received theirs in time.
If anyone reading this is going through a similar experience and would like to talk about it, please feel free to contact me [Marlaina Curry, P.O. Box 193, Manor, PA 15665; (412) 863-0689]. Many thanks to all the Lifeline readers who helped me get through my TPN pregnancy and transplant. And many thanks to all the doctors and nurses who have taken part in saving my life.
Medical Editor’s Comments: We published this article because Marlaina has put this issue, small bowel and liver transplant, into proper perspective. It should be stressed that currently, if you have no serious TPN complications like liver disease or total loss of all venous access sites, long term TPN is still the safer way to manage short bowel syndrome.
Copyright © 1995 The Oley Foundation
3/2/2017Riding the Tube
2/9/2017Mums team up for "tubie" support